OPINION: Social media shaming and blaming shows HIV stigma persists

The response on social media last month to a Sydney PrEP user who shared his story of contracting HIV while taking the prevention medication has shown that HIV stigma is still sadly persistent, writes Douglas Billing.

After scrolling through threads on social media following the articles that have been published regarding a man who has become HIV+ following the use of PrEP on demand, an evidence-based prevention method, I’m disheartened at the lack of compassion and empathy.

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The level of shaming and blaming is beyond words and shows that there is still such a divide within the community when it comes to HIV prevention and even more so with the people who are actually living with the virus.

Gone are the days when people rallied together in crisis and organisations such as the Global Men’s Health Crisis or ACT UP are founded, to ensure that LGBT+ rights would continue, and that the tragedy that occurred due to AIDS would be addressed as at the time it was being ignored.

It appears that this level of compassion and empathy that was displayed over 30 years ago when the crisis began is no longer part of our community.

Through reading memoirs and true accounts of the epidemic, and studies showing that people living with AIDS from this time have forms of PTSD due to the tragedy that occurred, it was evident that the community rallied and fought to ensure their survival through this period of time.

A time when no one was safe, everyone believed they were going to die, and the conservative straight population turned a blind eye and believed that this was God’s punishment for our acts of homosexuality.

Hospitals would not admit patients who had the “gay cancer” and even funeral homes would not take the bodies and refused to cremate them.

Now we have entered into the time after AIDS when HIV is now a treatable disease, some say better than having diabetes.

People living with HIV are not able to pass the virus on if they are on treatment and have an undetectable viral load. This is evidence-based and has come from years of research.

People living with HIV now live an almost full life span. Gone are the days of the Grim Reaper, though the fear created by this still lingers.

How is it that we have come so far with the treatment of HIV and now the use of PrEP but in response to the recent case, there is a long list of people shaming and blaming, convinced the person it must be his fault?

Where is the compassion and empathy for our fellow human being?

Why do we feel the need to automatically blame the person, when there are numerous factors that contribute to the failure of an evidence-based prevention regime?

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When did we lose all humanity and decency to not even provide well wishes and ensure the person is okay?

When did we give in to irrational fears to continue this shaming and further increase the stigma of people being diagnosed with HIV, shaming those to come in the future who are diagnosed into not telling anyone what has happened to them, causing them to feel even more alone and ashamed, causing them to give up completely?

This is literally contributing to the increase in deaths by suicide due to diagnosis.

PrEP has never been stated as having 100% efficacy. Both methods of taking PrEP – daily and on-demand – have been studied and both are still not 100%, which is also the case for condoms.

Both methods carry a level of risk, and it is up to the person as to how they manage these risks.

When a condom failure occurs, do we then state that the person should have been on PrEP as well?

Because they were not on PrEP when using the condom is it then their fault when the condom fails to protect them from HIV and really, they just should not have been having sex in the first place?

Why have we all of a sudden turned the narrative into an instance of slut-shaming? Is this the type of community we are a part of?

One where someone shares their story to alleviate people’s stress and fear, yet due to the negative narrative alive within the community and the stigma that is already surrounding these topics, rather than support, empathy and compassion, the person is met with blame, shame, stigma, slut-shaming, uneducated opinions, or opinions based on fear, rather than fact.

No method is 100% and no one, no matter how much you manage the risks and take precautions, is 100% safe from contracting HIV.

In saying this, there are numerous ways that you can try and protect yourself and ensure that your risk is reduced substantially as outlined by all of the leading organisations in the attempt to end HIV and work towards 0 transmissions.

But this cannot be done without the participation and support of the wider community.

This cannot be done when there is still so much prejudice, shaming, blaming and divide within the community when it comes to HIV.

The lack of empathy, compassion and support that is shown when someone is diagnosed with HIV in today’s society, when biomedical changes have been huge to the point where it is safer to be with someone who is undetectable than someone who doesn’t know their status, is very disheartening to see.

As a HIV+ man myself since 2016, I am extremely grateful that I had the loving and supportive people surrounding me at the time of diagnosis that I did.

I do not think I would have made it if instead of these people, all I had was the people on social media who are apparently experts in the HIV prevention and management department.

I will say this to all those who participate in sex with another person (as all are at risk of contracting STIs):

As this is a virus and it certainly does not discriminate, I hope that if one of you do contract HIV despite taking precautions, you have support, love, kindness and empathy.

I hope you are surrounded by people that are not going to blame and shame you, tell you that you should not have had sex with a guy you only just met, or tell you that you did not protect yourself properly, or tell you that it was your failure that caused this to happen.

There are so many things that are going through your head at the time of diagnosis, which includes blaming yourself and shaming yourself. You do not need others directing their shame and blame at you as well.

I hope that if you are diagnosed, I hope that you do not get blocked continuously on dating apps, or have people tell you that you are dirty or spreading disease.

I hope that you do not get outed by people who believe you are a threat to the health and safety of others.

I hope that health professionals treat you with kindness and do not continue to discriminate or treat you differently due to your status, even though you are no harm to them or others and they should know better.

I hope that if you contract the virus and tell your story, that trolls and internet warriors, with misguided opinions do not come for you and that they do not continue to spread fear and hate.

I hope that you are surrounded by love and compassion, empathy and understanding and that a narrative is created in which you are supported to tell your story, to placate others fears, to reassure your tribe that you are indeed going to be okay and most of all that you are not to blame and that you should feel no shame.

That it is 2019 and biomedical changes have come a long way to guarantee and ensure that if you live your life healthily, you can achieve a long and happy life.

I hope for you that you find a partner who loves you and accepts you for who you are and is educated and is aware of U=U and the threat that you certainly do not pose to his or anyone else’s health.

I hope that he does not shame you or perceive you as a slut due to your diagnosis and that they simply love you and support you in everything that you do regardless of your status.

I hope for you the health that you deserve, and that is now achievable through the treatment methods that are now available. I hope for you a happy family, as a HIV+ person can now have children without passing on the virus.

And I hope for you that you are strong willed, brave and courageous, because if this were to happen to you, if you were to become part of the HIV+ community, it definitely takes balls to stand up, voice your story, be heard, reduce stigma and still maintain not only your physical health but your mental health.

I hope for you the world, because that is what each member of our community deserves, and we should all be fighting, rallying and supporting each other, just as we did for marriage equality.

Please have compassion and empathy for all members within our community.

If you need someone to talk to, help is available from QLife on 1800 184 527 or online at QLife.org.au, Lifeline on 13 11 14, or beyondblue on 1300 22 4636.